Putting cultural difference in its place: Barriers to access to health services for parents of children with intellectual disability in an urban African setting

Abstract

Background: Access to appropriate specialist level services for children with intellectual disability is challenging in Africa, with very few services available. Much literature on the utilisation of services by carers of children with intellectual disability in Africa emphasises the supposed incompatibility between indigenous and western beliefs, failing to identify more obvious, embodied barriers to access to care. Method: As part of a study on children with intellectual disability in Cape Town, South Africa, we interviewed caregivers regarding the difficulties in accessing care, specifically the complex, expensive and time-consuming travelling routes from home to care. Results: Caregivers discussed the embodied difficulties accessing care. Everyday struggles with transport, and crowded, dangerous and hostile environments were identified as barriers to care. Conclusion: These challenges are often overlooked in the literature, in favour of an emphasis on cultural difference. This dualistic view of the world may obscure more obvious reasons why people find it difficult to use services, even when they are available.

Adapting Attachment and Biobehavioral Catch‐up for infants and young children with intellectual disabilities and developmental delays in South Africa: Reflections and recommendations from local stakeholders

“…The ABC—albeit indirectly—may have a role to play in counteracting the effects of stigma for parents and caregivers of children with ID/DD. Stigmatizing experiences in relation to their child's disability are commonly reported among caregivers in South Africa (Malatji & Ndebele, 2018 ; Mkabile & Swartz, 2021 ; Mmangaliso & Lupuwana, 2021 ; Modula, 2022 ) and other African contexts (Aldersey et al., 2018 ; Masulani‐Mwale et al., 2016 ; Oti‐Boadi, 2017 ; Tekola et al., 2020 ; Tilahun et al., 2016 ; Zuurmond et al., 2020 ). This may be particularly acute in township and rural communities where a combination of factors such as poor education, poverty, and unemployment may magnify stigmatizing experiences related to having a child with ID/DD (Rohwerder, 2018 ; Zuurmond et al., 2020 ).…”

“…( 2020 ) found, for example, that the social aspects of a home‐visiting community health program were considered equally as meaningful as the professional, disease management aspects, highlighting its significance. This suggests that the core targets—the clinical aspects—of the ABC as well as its supportive role—the interpersonal connectedness aspects—may be key assets for families of children with ID/DD, especially in communities where stigma, isolation and exclusion remain significant social issues such as in under‐resourced communities in South Africa (Mkabile & Swartz, 2021 ). While South Africa has, to a limited degree, achieved steps toward greater inclusiveness—through attempts at deinstitutionalization, for example—people with disabilities and their families remain isolated within their communities and rarely participate in community life (Capri et al., 2018 ).…”

Factors Affecting Access to Healthcare Systems for Children under Five Years with Disability in Low Resource Setting: A Case Study of Wajir County Referral Hospital, Kenya

“…Since the mother-in-law makes decisions in these countries, her attitude and knowledge of child healthcare practices could have a significant impact on the decisions regarding when health care facilities are accessed. Moreover, people's perceptions about disabilities and their overall well-being, as well as their search for assistance, were major obstacles to greater use of healthcare services (Patel et al, 2017;Mkabile & Swartz, 2022).…”